End of life care in CF: Patients, families and staff experiences and unmet needs

M Braithwaite; J Philip; H Tranberg; F Finlayson; M Gold; T Kotsimbos; J Wilson

Journal article

End of life care in CF: Patients, families and staff experiences and unmet needs

M Braithwaite, J Philip, H Tranberg, F Finlayson, M Gold, T Kotsimbos, J Wilson

Journal of Cystic Fibrosis | Published : 2011

DOI: 10.1016/j.jcf.2011.03.002

Abstract

Palliative care is not well understood in CF. Unmet needs of patients with CF, their families and staff were explored. Method: Focus groups and interviews with forty-two participants (12 patients, 10 family members and 20 staff) were conducted at a university teaching hospital. Results: Thematic analysis identified six themes. Knowledge: Patients and families felt their knowledge of palliative care was limited. Psychological frame: Hope and a positive psychological frame was essential to coping, however, this was a hindrance to the acquisition of information. Denial as a coping strategy resulted in a lack of preparation for declining health. Treating team: High expectations were placed on th..

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University of Melbourne Researchers

Jennifer Philip Author

Grants

Funding Acknowledgements

[ "All authors declare that the answer to the questions on your competing interest form are all No and therefore have nothing to declare. Ethics approval was granted from the Alfred Ethics Committee project number 88/06.", "This project received funding from a research grant from the Australian Cystic Fibrosis Research Trust." ]